Advocacy

Like many of us with rare diseases, I’ve been through years of searching for a diagnosis, being dismissed and not believed by doctors, being told I had a mental illness, or just being turned away. It’s been incredibly frustrating, and I’m now trying to channel that frustration into real change for patients with rare diseases, diagnosed and undiagnosed.

After I recovered from malnutrition, my feeding tube surgery, and my hysterectomy, I began this blog. As time went on and I realized how broken the medical system really is, I started to think about what I could do about it. What really galvanized me was when the reaction by the government and medical industry to opioid crisis started interfering with my ability to receive proper medical treatment. I became concerned that I would lose my medication. I started hearing reports of patients being forced to take drug tests, having their prescriptions reduced or just plain being cut off, in addition to doctors refusing to prescribe opioids at all for any reason. The more research I did, the more worried I became. It’s everywhere, it’s happening fast, and nobody is standing up to protect patients like me.

The federal government, the CDC, the FDA, the DEA, medical boards, politicians on Twitter – you name it, people are coming out against opioids. Never mind all the people who use them responsibly to give them some quality of life. Never mind all the data that shows that people who get their prescriptions from doctors are not the main problem. Never mind that prohibition does not work, that the “War on Drugs” has been a colossal failure, and that reactionary laws have unintended consequences. It’s the “cause of the month” and the government can’t make laws fast enough. You can’t turn on the TV or radio without hearing about people being affected by opioid addiction, but the story of the chronic pain patient who is now being treated like a criminal for no reason is not being represented.

This is what I’m fighting against. I’m also fighting for increased awareness about rare diseases, more research, better patient care, and patients’ rights in general. I started on my own, but along the way I’ve been meeting amazing people who are fighting for the same things. You can read about my efforts throughout my blog and at the links below. Please feel free to contact me if you’re interested in joining the fight. You can also contact your elected officials any time and tell them how the reaction to the opioid crisis is affecting you. Remember, even if you are healthy now, none of us know what the future may bring, so preserving proper pain management helps us all.

For more on my advocacy activities, check out the post links on the right!